Sunday, December 30, 2007

What a week. I got the Groshong catheter installed Wed noon. Stayed in the bmt ward overnite, got adavan at 5am then the test chemo dose at 6am. The adavan knocked me out so i was totally unaware of anyone hooking me up to the 2 hr busulfex dose from 6-8am. On friday i got a 2 pint transfusion of rbcs, prolly my last from the clinic near my home. They used the new catheter in my chest. The area is still a little sore. From here on out, any more rbc transfusions will be done by the bmt nurses at the hospital.

I think I found out that I will be switching blood types in the next few weeks. I'll be going from A-pos to B-pos. The donor is B-pos and male.

I have plenty of DVDs to watch and we also get netflix. My fam got me a mobile dvd player! The rooms have a small TVs in the upper corner equipped with a VHS player. But who has VHS tapes anymore?? Half the rooms have ocean views and half have parking lot views. So i will either be watching hang gliders over the torrey pines golf course or people walking to and from their cars. mmmm, which side do i want??? Actually I dont really have a preference.

I'd like to blog every day. But after my short experience with adavan, the anti-seizure/nausea medicine, I may be too ditzy and wiped out to think clearly during the 4-6 days of chemo. Maybe i'll be able to type out a few words. I'll show Cathie how to post.

Sunday, December 23, 2007

I have incorporated some lyrics from the song by Yes, "It Can Happen", into the header of my blog. In addition, I've placed a link for the song in the sidebar.

The purpose of this theme is probably far from what you may think, that is if you have given any thought to the theme at all. The songs lyrics repeat several times, "It can happen to you, it can happen to me, it can happen to everyone eventually". What is "it"? This is one of the reasons I like the song so much. It is short, but it asks a question that does not seem to be answered. What is "it"? If you want to take a shot at the answer feel free to read the lyrics at this point here. There are a few errors in the lyrics as presented on the linked website, but they dont affect the question and the answer. Hint: The answer is in the song but you wont find it in the published lyrics.

What it is not. I did not incorporate this theme to say that "getting my disease, or any disease, can happen to anyone." In fact, regarding my disease, Myelodysplastic Syndrome, I would bet that NONE of you will get it. It is rare. Much more rare that any disease you have probably ever heard about. The incidence is less than 12,000 people per year in the US. MOST of these cases are people over 60 years old. So, in the San Diego area with a population of around 3 million, there might be 120 people diagnosed per year and maybe 30 of these are under 60 years old. Very rare. This is not a disease you have to worry about.

Then what is it? At the very end, as the song is fading, the chorus is repeating. As the people who took the time to write down the lyrics have put down their pens and the volume has dwindled to maybe a quarter of the full volume, lead singer Jon Anderson provides the answer, "You can love yourself". Hear it for yourself. The answer is provided only at this one place in the song.

As rock music philosophy goes this song contains a rare gem. This is my take on the message: Loving oneself is a process and one should let it happen, not fight it. We can architect our lives around it. If we open our eyes we can see beauty of it. If we let it happen, it *will* happen.

I think it's a good message. I'd be willing to bet that a lot of good things can and will happen in ones life if it is allowed to happen.

That's why I have a fond place in my heart for the song and why I've included it as a theme in my transplant blog.

Wednesday, December 19, 2007

I've been resurrecting my trusty old Dell Latitude CPx laptop, circa Jan 2000. I used it extensively a few years back when I traveled every week to Penn on an IBM contract. But it's been gathering dust for 3 years now. Apparently during my 4-6 week incarceration coming up in 2 weeks, wireless access will be provided by the establishment. So I bought a wireless G pcmcia card (remember those) ($20) and a compact flash pcmcia card ($10). Amazingly, the laptop battery still works. Since I'll have 110 volts in my room I wont need a battery anyway. So... this means I'll be able to A) post to this blog, and, even better B) load pictures I take with my Olympus EV300 directly to the laptop. This way I can show you pictures of my cue-ball head as well as other things of great community interest. Here is my latest schedule. This Friday I spend a few hours at the hospital for various tests and consultations. I think they want to make doubly sure I know what the heck I'm getting in to. Dec 26 I will get my vascular system hard-wired to a port in my chest (enuff said). I will stay at the hosp that night. At 6am Dec 27 I will get a test dose of Busulfex for 2 hours. From 8am to noon there will be several blood tests where the doctors will find out how my body metabolizes Busulfex. This will allow them to determine the 'correct' dosage for the following week. I'll go home after noon on the 27th. Jan 2nd I will be hospitalized. First I will begin 4 days of non-recreational use of the wonderful drug Busulfex. Around Jan 9th the docs will administer the antidote to all the Busulfex: stem cells from the kind donor. If everything goes as planned, the new stem cells will begin crankin out new red,white and platelet cells by Jan 22. When the doctors determine that the engraftment is succeeding, blood counts are on the rise, I will be released back to my home to start several months of recuperation. My immune system will be brand new and will have to start learning about the world of germs all over again. Basically this will get me out of housework for a while. There will be a lot of hand washing and wearing of surgical masks. After a while my hair will grow back, maybe even without the gray!I am totally optimistic. And I appreciate all your prayers, wishes, and good will. Merry Christmas and/or Happy Holidays to you!Jim

Wednesday, December 5, 2007

At this morning's appointment, my doctor and nurse had some good news. Cathie attended this appointment. As usual she was a great help in asking the right questions and being supportive.

My transplant procedures will start January 1. Yipee!

Here are some details. (Rated PG13)A transplant date has been set for January 9. That is day zero when donor stem cells will be transfused into my central line catheter. The catheter will be surgically implanted in my chest during Christmas week. My 4-5 weeks of hospitalization will begin the night of January 1. That is when I start several days of chemotherapy with a drug called Busulfex. This wonder drug causes "profound myelosuppression", it kills bone marrow cells including stem cells. Out with the old, in with the new! (Gulp). Good news did I say? I realize how awful my good news sounds. But its all relative. Hey, compared with the bad news that would eventual follow if I just let my condition run it's natural course... Caveat: The transplant date is contingent upon the donor passing his final tests next week. The other donor has been placed on 'hold' just in case the selected donor does not test out.

Special ThanxMany thanx and blessings to Cathie for being there for me today! And here's more great news. Cathie has volunteered to be my caregiver during my hospital stay and recovery! Being a caregiver for me over the next few months is going to take a huge effort on her part. My father and Maddie and Dylan will assist her in any way they can. I really dont know what I would do without Cathie's help.

Saturday, December 1, 2007

It now looks like my efforts to get rewired will be delayed until January.

Cindy says she was contacted by the NMDP Thursday. They told her that the donor has an appointment for testing Dec 13, no other details were provided to her. This news comes after Cindy told me a couple weeks ago that the donor had gone in for testing a week earlier. Cindy speculates that the donor may have had an active cold or flu virus in November. I have all kinds of questions but there are few answers. Cindy scheduled a check-up visit with her and my doctor this coming Wed. So, I'll try to get a better feel for the whole donor scheduling process then. I suspect that this is just the way the NMDP works. We have to assume they are acting for the good of both the patient and the donor.

I'm thinking that if the donor gets tested Dec 13 then the test results won't be ready until a week later. The NMDP will notify the donor close to Dec 19 that he is ready to donate. The donation process requires the donor to visit their local hospital for a quick shot 4 days in a row. On the 5th day the donor visits the hospital one last time for a few hours as his blood, now teeming with his myeloid stem cells is filtered through a machine which harvests the cells. I don't know how large of an imposition this entire process may be on the donors holiday plans. Example: how far must the donor drive to get to a certified donation hospital?So I'm guessing the donor will not want to schedule the procedure until after the new year. But I'll go whenever I'm called. Approximately the same day the donor gets his first shot I will start my chemo preparation and be hospitalized.

The donor delay is a mixed blessing. There has been and continues to be risk associated with delaying a stem cell transplant. However, during yesterday's transfusion as I sat in the chemo recliner and pondered things, I once again had to look no farther than the chairs next to me to know that I should not complain about -anything. On my right, a very nice middle aged lady with incurable bone cancer, on my left a wonderful older gentleman with leukemia. In the other chair was a middle aged man that I think was getting a dialysis flush. He may have renal cancer. I know the names of some of the people I meet in those recliners. I've seen some several times. There are those I used to see often but have disappeared. I don't want to ask the nurses about their whereabouts.

I am very happy to be able to share this Christmas with my family at home. It had been shaping up that I was going to be in the hospital over Christmas and New Years. This is the second Christmas that I have had to contemplate possibly being my last. It is a very strange thought.

There are at least 2 posts that I want to write this month. One post will be to thank all of you who read this. I realize that the subject matter of this blog is difficult. The other post will be a light hearted, easy to read attempt to explain what MDS does inside the body, and how a new set of myeloid stem cells from a very closely matched donor angel can quickly 'fix' the problem.